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With a Little Help from My (Hemophilia) Friends

Laurie Kelley November 10, 2014
While I’m on vacation this week, please enjoy this fascinating bit of hemophilia rock trivia from our colleague Richard Atwood of North Carolina!

During their 1964 tour of America, the Beatles stayed in Los Angeles for five days. The band rented a mansion at 356 St. Pierre Road in the Hidden Hills neighborhood of Bel Air. They held a sold-out concert on Saturday, August 23 for almost 19,000 paying fans seated inside the Hollywood Bowl, plus another 10-15,000 gate-crashers in the trees outside the amphitheater. Capitol Records planned to record the live concert but the continual shrieking by the audience prevented a good sound recording. After
their performance, the band members partied until dawn at their gated house
with about 30 starlets, including Peggy Lipton, Joan Baez, Billy Preston, and
Ray Hildebrand and Jill Jackson (known as Paul and Paula).
Then on Sunday afternoon, Brian Epstein and the Beatles attended
a charity garden party hosted by Alan Livingston, the president of Capitol
Records, in the Brentwood backyard of Livingston’s mother-in-law. The party was a fundraiser for the Hemophilia Foundation of Southern California. Livingston’s wife, the actress Nancy Olson, was a foundation board
member. Hollywood celebrities were charged $25 each to bring their children.
This event, held on August 24, 1964, raised $10,000.
“At the party, Livingston went to great lengths to accommodate the Beatles, who, after being cold-shouldered by the label, had rocketed Capitol’s profits into stratosphere. No expense had been spared to stage a Hollywood-style spectacular. A festive striped tent had been set up in
the spacious backyard, where vendors dispensed soft ice cream and lemonade to a litter of gorgeously groomed children. There were pony rides and games. Security was unparalleled, befitting a presidential visit, with a fully armed riot squad stashed in the garage, just in case. The guest list was a who’s who of local dignitaries, complete with a selection of hand-picked celebrities, each of whom was required by the hosts to bring a child: Edward G. Robinson had in tow his granddaughter, Francesa; Lloyd Bridges, his son Jeff; Rita Hayworth, her daughter, Princess
Yasmin Khan; Donald O’Connor, his son, Freddy, and daughter, Alicia; Jack Palance, his daughter, Holly; Eva Marie Saint, her son Darrell, and daughter, Laurie; Barbara Rush, her son Christopher; Jeanne Martin brought five of Dean’s children a few feet in front of Jerry Lewis, who bolted as soon as he saw them, leaving his son, Gary, behind rather than risk an encounter with his estranged partner.” (pp. 527-528).
The Beatles were not impressed with the fundraiser. “We saw a couple of film stars,” John [Lennon] relented, but added: “We were expecting
to see more.” (p. 528).
Richard writes: The hemophilia fundraiser was just a minor event in the definitive biography of the Beatles. Captured on news footage and
reported by Saul Halpert, the hemophilia fundraising event has since been posted on YouTube. Other celebrity guests who reportedly attended but were not recognized in the biography included John Forsyth; Groucho Marx; Jack Benny; Jack Lemmon; Rock Hudson; Dean Martin; Richard Chamberlain; Hayley Mills; Shelly Winters; Hollywood columnist Hedda Hopper; Los Angeles mayor Sam Yorty, his wife, and his son, Bill; and Kenneth Hahn with his daughter, Janice. A multitude of teenage fans and press reporters remained outside the mansion gates that Sunday afternoon.
 
From Bob Spitz, 2005, The Beatles: The Biography. New York, NY: Little, Brown and Company. 984 pages.The 984-page biography of the band includes 32 pages of photographs, 4 pages for Acknowledgments, 87 pages for Notes, 11 pages for a Bibliography, 3 pages for a Discography, and 21 pages for an Index. The author lives in Connecticut.

Blood: From Vitalism to Vampires

Laurie Kelley November 3, 2014
Halloween has passed, and though it’s fun to see our friends’ and family’s children dressed in costumes on Facebook, there are plenty of
“shock” photos circulating on the internet of dummies smeared with blood—one even prompted a 911 distress call, so realistic was it. Halloween conjures up images of Friday the 13th movie characters as well as vampires.
Transfusion: Now that’s scary
Our business in hemophilia is blood. Blood at once attracts and horrifies; it is the stuff of legends
and tales, myths and medicine. I recently read the classic Dracula [read the book review below] and was amused to read how Dr. Van Helsing wanted to help the young Lucy, a victim of a vampire, by giving her
a transfusion of blood. “Is it you or me?” he asks Dr. John Steward, about who will roll up their sleeve to donate; Steward who replies, “I am younger and stronger, Professor. It must be me.”
Steward offered his blood based on the concept of vitalism, that blood contains the traits
of the being in which it flowed—a concept that was unchallenged for fifteen
hundred years. Later in the book, Van Helsing says to Lucy’s fiancé Arthur, “John was to give
his blood, as he is the more young and strong than me…. But now you are here,
you are more good than us, old or young, who toil much in the world of thought.
Our nerves are not so calm and our blood so bright than yours!”
So Arthur becomes the better blood donor because he is calm and not scholarly! Of course, this is nonsense, but author Bram Stoker fell for the widespread belief in vitalism when he wrote his book. Dracula isn’t so picky; he pretty much would drink anyone’s blood.
Douglas Starr tells us in his book Blood that the Egyptians saw blood as the carrier of the vital
human spirit, and would bathe in it to restore themselves. Roman gladiators
were said to have drunk the blood of their opponents to ingest their strength. “Our
own culture attaches great value to blood, with the blood of Christ as among
the holiest sacraments, blood libel as the most insidious slander, the blood-drinking
vampire as the most odious demon.”*

Not so picky: Any old blood will do
Vampires… which are repelled by garlic and crucifixes (the two seemingly have nothing to do with one another). Yet rather than secure eternal spiritual life by consuming wine that has been
transformed into Christ’s blood during Christian mass, Dracula drinks human
blood to extend his physical life.
The only thing scarier than vampires is the proliferation of teen movies about vampires!
*Starr, Douglas (2012-09-05). Blood: An Epic History of Medicine and Commerce (Kindle Locations
97-101). Knopf Doubleday Publishing Group.
Great Book I Just Read
Dracula  [Kindle]
By Bram Stoker
I haven’t read this book since high school, and forgot how
wonderful and visionary it is. A classic, as it has spawned an entire genre of
books and movies. Jonathan Harker, a young English lawyer, is summoned to Castle
Dracula in Transylvania to finalize a real estate transaction with the eerie Count
Dracula, who is purchasing property in London. Harker is warned by local
peasants, who give him crucifixes and other charms against evil. As a guest,
Harker soon notices strange things: the Count has no reflection, is never
present in daylight, and scales the castle walls downward, like a lizard.
Unable to escape, Harker is soon a prisoner, until the Count reaches London,
with 50 boxes of earth. The novel is told only through letters and diary entries
of the main characters, including: Harker’s fiancée, Mina Murray; her friend
Lucy Westenra, who is bitten by Dracula and slowly turns into a vampire; Dr.
John Seward, Lucy’s doctor and once beau. Harker reappears in Budapest and eventually
returns to London. Dr. Van Helsing, an expert on vampires, is called in from
Holland to help save Lucy. Everyone realizes Dracula’s scheme to populate
London with the “Undead”—vampires. When Mina is bitten, and begins to turn into
a vampire, the men sterilize the boxes of earth, set about London. Dracula,
having no haven to stay when dawn comes, flees back to Transylvania, while the
men pursue him. This is a fantastic story, though the language is not lofty or
even that clever, with memorable characters, and cleverly told in letters and
diaries. Perfect Halloween reading. Five/five stars.
 

Cheers! To the Colburn-Keenan Foundation

Laurie Kelley October 27, 2014
The weather was spectacular in Simsbury, Connecticut for the annual “Wine by the Vine” fundraiser to support the Colburn-Keenan Foundation. I was happy to attend with my boyfriend Doug and met up with my brother Tim and his wife Lee. We also socialized with many friends from our hemophilia community including nonprofit friends, pharmaceutical and homecare rep friends and friends of friends!
For only a $50 admission ticket we were able to sample lovey and delicious wine and beer locally brewed by Rosedale Farm, where the event was held. It was fun to chat with friends, sample the goods, enjoy hot hors d’oeuvres and beautiful desserts, and listen to a folk singer from 3 pm – 6 pm.
Laurie Kelley with Sandy Williams of Novo Nordisk

The Colburn-Keenan Foundation is named in part after a legend in our community: Donald Colburn. Donald had hemophilia, HIV, and its complications and had already founded American Homecare Federation (AHF), a successful homecare company. Donald was responsible for kicking off NHF’s Campaign for a Cure back in 2000 with a half million dollar grant. They also had adopted a child with hemophilia from Eastern Europe. Sadly, Kathy passed away from cancer in May 2006 and Donald passed away from cancer in July 2006. The Colburn-Keenan Foundation, founded in 2006, represents their dream and a living legacy to their outstanding lives of philanthropy. The majority of their personal estates have gone into a trust to fund and sustain the Foundation, where amazingly 100% of monies raised will go directly to programs and services.

These services include providing financial assistance to individuals with chronic illnesses, with a priority placed on those living with a bleeding disorder. These include providing assistance with insurance premium, deductible, and co-pay expenses and assistance with all other socioeconomic expenses such as rent/mortgage, utilities, car insurance or repairs, medical travel, funeral expenses. And  the Foundation provides more!

Since its inception in 2006, the Foundation has provided a whopping: 1) $981,139 in individual assistance grants; 2) $188,000 in organization grants and 3) 118 scholarships totaling $544,000.

This generosity made it very easy for me to justify playing in the silent auction. Though  a fierce competitor beat me in the African Safari auction item, I did win James Taylor tickets (which I happily gave to my brother Tim and wife Lee, me being more a classic rock kind of girl; see my book review below) and Patriots tickets and a signed baseball by David Ross of the Red Sox, both of which I more than happily gave to sports-fan Doug. I was happy to take one of the many pumpkins home as my prize!

Congratulations to the stunning work of the Colburn-Keenan Foundation!

For more info: http://www.colkeen.org/

Good Book I Just Read

Slash by Slash [Kindle]

You’ve got to give Slash credit for just being alive. The former guitarist of the 90s band Guns N’Roses uses a pacemaker to keep himself going after the wretched excesses of life on the road in one of the most popular bands of their era. In this bio, Slash, born in England as Saul Hudson, the son of parents already steeped in the music industry, runs wild as a child in the streets of LA, becomes a defiant teen, develops a true passion for music and the guitar and becomes an accomplished guitarist, helping to form the band GNR. Debauchery describes the band’s lifestyle and impact as it acted out with drugs, alcohol and sex, trashing hotel rooms, causing problems for everyone including police and business owners, and eventually ripping themselves in two when the volatile and mercurial Axl Rose has a prolonged showdown with the often drug-induced and soft-spoken Slash. To this day they do not speak. Slash tells his tale factually and hides nothing, except for an in-depth analysis of what really ailed Rose and GNR. Slash may have been too doped up to know. The birth of his first son was the impetus to get clean once and for all and he has come out ahead. He is a talented guitarist (just saw him live this summer, up close), and has evolved with several bands, currently with Myles Kennedy and the Conspirators. A good read, easy and interesting, but also sad… that so many rock stars are bent on self-destruction. Here’s one who went to the brink—and lived to tell the tale. Three/five stars.








		

				

				

				

				

			
				The Blood Moon			
		

				

					
			Laurie Kelley		
				
			October 20, 2014		
				

		


A natural phenomenon occurred October 7-8: a Blood Moon with an accompanying lunar eclipse. I’m interested in how and why this term, which is

becoming more widespread, developed, and in all things related to blood. The origin of the term is religious, according to Christian pastor John Hagee.


From the internet I gleaned this: Hagee used the term “blood moon” to apply to the full moons of the ongoing tetrad – four successive total lunar eclipses, with no partial lunar eclipses in between, each of which is separated from the other by six lunar months (six full moons) – in 2014 and 2015. John Hagee appears to have popularized the term in his 2013 book Four Blood Moons: Something is About to Change.


Hagee speaks of a lunar tetrad as representing a fulfillment of Biblical prophecy. After all, the moon is supposed to turn blood red before the end times. Why are more and more people are using the term “blood moon” to describe the four full moons of a lunar tetrad? No one really knows!


But in astronomy, writers often describe a totally eclipsed moon as appearing “blood red.” A moon may look

red during a total lunar eclipse because of sunlight that is filtered and refracted by Earth’s atmosphere. From the website

“earthsky.org”:


“During a lunar eclipse, you’ll see the Earth’s shadow creeping across the moon’s face. The shadow will appear dark, like a bite taken out of a cookie, until the shadow completely covers the moon. Then, during the breathtaking time of totality, the

shadow on the moon’s face often suddenly changes. Instead of dark, it appears red. Why?


“The reason stems from the air we breathe. During a total lunar eclipse, the Earth lies directly between the sun and the moon, causing the Earth to cast its shadow on the moon. If Earth didn’t have an atmosphere, then, when the moon was entirely within Earth’s shadow, the moon would appear black and invisible.


“Thanks to Earth’s atmosphere, what actually happens is much more subtle and beautiful. Earth’s atmosphere extends about 50 miles (80 kilometers) above Earth’s surface. During a total lunar eclipse, when the moon is submerged in Earth’s shadow, there is

circular ring around Earth – the ring of our atmosphere – through which the sun’s rays pass.


“Sunlight is composed of a range of frequencies. As sunlight passes through our atmosphere, the green to

violet portion of the light spectrum is, essentially, filtered out. This same effect, by the way, is what makes our sky blue during the day. Meanwhile, the reddish portion of the spectrum is least affected.


“What’s more, when this reddish light first entered the atmosphere, it was bent (refracted) toward the Earth’s surface. It’s bent again when it exits on the other side of Earth. This double bending sends the reddish light onto the moon during a total lunar

eclipse. Depending on the conditions of our atmosphere at the time of the eclipse (dust, humidity, temperature and so on can all make a difference), the surviving light will illuminate the moon with a color that ranges from copper-colored to deep red.”


So, watch for the “blood moon” during a lunar eclipse!




Great Book I Just Read


Three Dog Nightmare


Chuck Negron




My first LP was “Golden Biscuits” in the 1970s, and so began my life-long love of Three Dog Night, the popular rock band of the 1960s and 70s. Who knew

the debauchery and drug-induced devastation that took place? Negron, lead

singer with a powerful voice, details his rise to stardom and then the slow and sharp decline into

the life of a junkie. He spends his entire fortune on heroin, destroys

relationships and the band, and brings his children into the world addicted to

meth and heroin. That he is still alive and performing is a miracle, after

being so near death for so many years. He engages in crime, sinks to the level

of street junkies, gangs, and would do anything—anything—to get his next fix.

It is a shocking and disturbing portrait of the high price of fame and a

natural inclination to addiction. I finished this in two nights: hard to put

down and technically an easy read. I deeply applaud Negron for sharing his life

and how he turned it around eventually. Hard to understand are his complaints and

character assassinations about his bandmates, particularly Cory Wells, which come

across as juvenile and unappreciative. Negron should never judge anyone after what he inflicted on others. Still, I will always love Three Dog Night! Negron is still touring solo, and Danny and Cory are touring as TDN. Three/five stars.













		

				

				

				

				

			
				Cambodia: From the Killing Fields to a Land of Hope			
		

				

					
			Laurie Kelley		
				
			October 14, 2014		
				

		








Laurie in a tuk tuk












After breakfast on Saturday October 4, I went with the “tuk tuk” driver to pick up Sithan. The tuk tuks are autorickshaws—motorcycles with rickshaws attached to them. Sithan is the 33-year-old president of the Cambodian Hemophilia Association (CHA), who has hemophilia. He was to join me today for a tour. When we got to his home, he met us at the gate not looking well. Pale, tired… he was bleeding from a serious dental extraction last week and it was really bothering him. We brought factor for him on this trip, and he had already used several vials, but now

needed rest.




The stupa 






So I went alone to the Choeung Ek Memorial, the “Killing Fields,” so dubbed by Dith Pran, theCambodian journalist who was portrayed in the movie The Killing Fields. This would be my second visit to a genocide

site (my first was in Rwanda earlier this year).




The tuk tuk ride was insanely wild, like being on a run away roller coaster. We jostled through

the streets of Phnom Penh, dodging cars, motorbikes and other tuk tuks. The tuk

tuk is open-sided, with a roof. The wind whipped my hair; the air is

gritty with pollution. I can’t help but think I’m in a little cart at a

low-budget Asian Disneyworld, on Mr. Toad’s Wild Ride. Motorbikes, carrying

young ladies with pink helmets, young men with intense looks wearing surgical

masks, even children—some sandwiched between the father driver and mother

passenger, sound asleep—swarm the cars and tuk tuks like ambitious bees.

Contributing to sensory overload are the odors: diesel fuel, thick, acrid

exhaust from vehicles; sudden sour smell of rotting garbage as we cross a bridge;

a surprise charcoal smell laced with delicious scent of roasted beef.













Mass grave of 450










My driver took back roads and alleys, some of which were nothing but huge mud puddles from the

rain. I actually started feeling really queasy and nauseated. I was glad that Sithan stayed home!




We arrived after 40 minutes and the driver sat in the lunch area while I paid the $6 admission

and picked up a headset and started the tour. Overhead was a brilliant blue sky

with a glaring sun basking us in 90° sunshine. Directly in front of me was the

huge stupa, or Buddhist temple. The soothing and paternal voice on the headset said to go there last. The narrator himself survived the vicious Pol Pot regime and felt honored to be able to

narrate what happened. There were many killing fields throughout Cambodia but

this was one of the most famous. There wasn’t much to see; some signs informed

us of what once stood there—the area where trucks would disgorge prisoners

(prisoners! They were men, women and children, average citizens), the place

where prisoners would be registered.

But there were graves of hundreds of victims, vaguely protected by a

small stockade around each mass grave. The first grave contained the remains of

450 victims; a sign told us that each time it rains, more remnants are

unearthed. It is not unusual to find human teeth or small bones still, after

all these decades. Clothing was displayed, and the bones of victims. As I

listened to my headset, a one-legged, dirty man stood by a tree; we were separated

by a wire fence, that’s all. He was begging, begging in his own country. I

handed him a $5 and he asked, “America?” And I nodded and smiled.






The Killing Tree









The Pol Pot regime

and his Khmer Rouge fighters took control of the country from 1975-1979, in the

attempt to create a Communist utopia. Pol Pot believed it was possible for

Cambodia to be self-sufficient, and in the process, dragged his country back to

the Stone Age, where everyone had to work communal farms, with no equipment or

machinery. All foreigners had to leave. Next came the purge of any

intellectuals: doctors, teachers, lawyers. Anyone educated was at risk of being

tortured and killed, and this was done in crude and primitive ways. Eventually

victims were brought to the Killing Fields, where they were murdered. Whole

families were wiped out. These are sites where unspeakable atrocities took

place. I reflected that from 1975-1979, the years I was in college, enjoying

life, going to dances, studying, eating, having fun… an entire generation in

Cambodia was being wiped out. While I slept peacefully in my bed each night, Cambodian

children were starving, dying, mothers and families were being tortured. They

were living in hell, imposed on them by their own rulers.










Stockade fence with prayer ties


I approached one

mournful monument, a tree, where babies were bashed to kill them, then tossed

into an open grave. The tree was decorated with little wrist ties of many

colors (you receive the ties when you make an offering at a Buddhist temple).

They looked like little yarn butterflies fluttering in the wind. The graves were

simple, marked with hand-carved signs. The bones, like those in Rwanda, were

out in the open. Nearby, a huge tree stood, a survivor, a mute witness to the

atrocities from the past. On it the Khmer Rouge rigged up loud speakers, over

which was played constant, loud propaganda from the screeching voices of the uneducated soldiers. The loudspeakers also covered up the screams of victims.















Eventually I came to the stupa. It is steady, solid, soaring… and stacked with skulls. Perched on the corners of each section are stone mythical creatures in Hindu religion: Garuda,

the winged birdman who carries Lord Vishnu. And Naga, a dragon/snake that is Garuda’s enemy. That they appear together here denotes peace. After removing my shoes respectfully, I climbed the marble stairs, which are strangely cool, even in the suffocating heat.




Facing me is a clear, acrylic wall, encasing thousands of skulls, bleached

white, stacked neatly. Each skull has been analyzed and marked with a color dot to denote its sex and how the victim was killed. They were killed in many

different ways but all primitive: cleaning rod was a favorite method. You can

look at eye level into these skulls, which were once peaceful, innocent people,

mothers and fathers, young men and women. You feel like talking to them,

apologizing, wishing they could have a chance at life, a normal life. Buddhists

believe in reincarnation, and looking at the bashed and pierced skulls, you

want to believe this is true for their peace. So few of us ever get to see a human

skull. When you gaze at one, emotions aside, you marvel at its architecture:

the nasal passage ways are intricate and refined, thin sheathes that capture

minute scents; the occipital bones are strong and full of character, creating

almost a surprised look. You’re reminded that each of us has one of these hollow-eyed,

whitened shells within us too, and, Caucasian or Khmer, we all look pretty much

the same once the skin is gone.






It started to downpour as I left, as the heavens opened and “threw down their spears.” (well,

it was stars in the poem) The driver unfolded the tuk tuk’s side canvas to

protect me from the rain, but with him driving, and other motorbikes and tuk

tuks throwing up water and mud, it was pretty messy, and yet refreshing as the

temperature has been a steady and muggy 90°.
















Monday October 6, 2014


We’re in Siem Reap today, where the ancient temples of Angkor Wat are, a World Heritage site (though better known in the west for being the location of the filming of “Tomb Raider”). After a great breakfast in the hotel, where they cater to your every need, Martha, Sithan and I headed in a tuk tuk to the Angkor Children’s Hospital nearby. Already 20 children and their

families were waiting for us. Cambodians are a truly beautiful people. I loved seeing the little children’s faces turned up at me, mixing shyness with

curiosity.




Martha gave a presentation about

Save One Life to the audience while Sithan translated. It was a long day in some ways:

sitting in a hot meeting room, tightly surrounded by incredibly impoverished, often illiterate, families whose children have bleeding disorders. We were only going to interview three families, but instead, we decided on the spot to interview them

all! So sitting in chairs that are like elementary school chairs, with a small tabletop attached, we divided up the families. Soreng, the social worker, took

some; Martha and Sithan took some; and the Dr. Sing Heng and I interviewed some. It took about two full hours, maybe more.

I also photographed them all. I handed out the gift bags, which were an

enormous hit—each child received an authentic Beanie Baby and some toiletries

and candy. The kids were adorable and mischievous, giggling and casting glances

at me, some brazenly looking and smiling. We connected with almost all.




As we interviewed, sweat constantly slid down our backs, dripped off our hair, but what an honor to meet so many! The local volunteers here did a great job mobilizing the families. The families were given meals in Styrofoam boxes, for which we paid. The hospital would kindly cover

their transportation costs.




The stories are sad; some heart-breaking. One boy with hemophilia, about 20, has mental issues; his

mother is partially paralyzed. They are very poor and have such hard lives. All these children will be available for sponsorship through Save One Life. 













Cambodian Hemophilia Society (in Siem Reap), with Martha and Laurie






It was tender, and heart breaking.

It’s easy to feel overwhelmed, almost defeated when facing the crushing truth

of poverty and hemophilia. Will we ever make a difference? And then, I think, if

we were not here, who would help them? Just $22 a month can truly change their

lives. We’ve seen it happen in other counties, and we are going to see it happen

in Cambodia.




(Do you see a child you want to sponsor? Visit saveonelife.net)




Great Book I Just Read


Survival in the Killing Fields [Kindle]


Haing S. Ngor




Ngor is famous for portraying the journalist Dith Pran, the subject of the 1984 movie The Killing

Fields, which won Best Picture, and earned Ngor, who was not an actor, Best

Supporting Actor. Ngor himself escaped the Killing Fields, but spent four years

working hard labor and starving on a communal farm. He had to hide his

profession as a doctor or he would have been killed. He was tortured several

times, brutally, and endured chronic starvation and deprivation. The story is

an easy read technically, but difficult emotionally. He reveals all that he

experiences from the point of view of the victim; he didn’t understand what was

happening, never heard of Pol Pot, and could only focus on survival. Eventually

he escapes in the last throes of the regime, when the North Vietnamese invaded,

and enters Thailand. He makes his way to the US, a broken man, angry, but still

surviving. Though he became a Hollywood overnight sensation, his life still did not go

easy. This should be required reading for high school students, and any fan of

history and survival. Four/five stars.



		

				

				

		
				

				
				

				

					

		

				

			

						

				

			
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